The value of valid reporting in medicine is so fundamental there’s no question about it when the issue is explicity raised. Unfortunately, it’s implicitly absent in too many aspects of CRPS care.

The inspiration for this article came from paperwork requiring me to rate my pain on the standard 1-10 scale. This is so irrelevant to life now that it’s simply not approachable.

Between my self-care strategies and spectacular mental gymnastics, the level of what most people would experience as “pain” is a secret even from me, until it’s strong enough to blast through the equivalent of 14 steel doors, each three inches thick. At that point, the numeric level is off the charts.

What’s useful and relevant is how well I can cope with the backpressure caused by the pain reflexes and the central and peripheral nervous system disruption this disease causes.

Read on without fear, because for one thing, it’s not contagious, and for another, your experience of pain — whether you have CRPS or not — is uniquely your own. This is mine, as it has changed over the years…

Step 1: Acute CRPS, with otherwise normal responses

My first pain rating scale, just a few years into the disease’s progress, was suitable for a normal person’s experience. My experience of pain was still pretty normal — apart from the fact that it didn’t know when to stop:

Unrated even numbers indicate a worse level of pain than prior odd number, which does not yet meet the criteria of the following odd number. Note that weakness is only loosely related to pain. I drop things and have trouble picking things up at times when I have little or no pain. However, as pain worsens, physical function consistently deteriorates.

Notice how the scale ties the rating numerals to physical and mental function. This is crucial, for two reasons — one personal and one pragmatic:

– Personally, I can’t bear to let misery get the better of me for long. Tying the numbers to specific features keeps the awful emotional experience of pain from overwhelming me. Making the numbers practical makes the pain less dramatic.

– Pragmatically, in the US, health care is funded by a complex system of insurance companies. Insurance companies are profit-driven entities who are motivated not to pay. One upshot is, they don’t pay for pain as such, only for limits on function. This makes my pain scales excellent documentation to support getting care paid for, because THESE numbers are tied to explicit levels of function.

Step 2: Early chronic CRPS, with altered responses

My next was upwardly adjusted to describe learning to live with a higher level of baseline pain and noticeable alterations in appearance and ability:

Mental impact

Physical changes

3 .

Noticeable when concentrating on something else. Trouble with new names/faces.

Notice how specific I am about what general tasks I can complete — following instructions, lifting things. These are the fundamental tasks of life, and how do-able they are is a fairly precise description of practical impairments.

Note how the actual value of each number changes over time. This highlights one of the most persistent problems with the 1-10 scale: its variability, not only from person to person, but from time to time.

Those are two completely different statements — but the number is the same! The value of each number on the 1-10 scale is essentially nil unless it has a description of what that number means at that point in time.

The usual justification for using the 1-10 scale is that it provides a point of comparison, letting clinicians know if the medication given has helped, and if so, how much. This is of tightly limited use, because it addresses pain alone without addressing function, and there is no pain medication on the market that does not have the potential to affect function. Even medicating pain effectively can leave the patient with function impaired, and that’s rarely well-addressed.

The CRPS Grading Scale

This case has evolved considerably in the past year. The other scales measure the wrong things now. Asking me about my pain level is bogus. It would have the asker in a fetal position, mindless; is that a 7 or a 10? Does it matter?

I need to avoid thinking about depressing things like my pain and my disability, because I must function as well as possible, every minute of every day. I focus relentlessly on coping with these issues and squeeezing as much of life into the cracks as possible — on functioning beyond or in spite of these limitations.

The fourth rating scale is much simpler than its predecessors. It’s based, not on level of pain or disability, but on the degree to which I can compensate for the disability and cope, think, and interact in spite of it. Therefore, this rating scale remains meaningful, because it describes my functional experience of life.

Hear constant screaming in my head, see white haze over everything, likely to forget what was just said, focus on getting through each moment until level improves, manner from absorbed to flat to strange, will snap if pushed.

So what’s the point of all this?

The treatment for this disease is stuck in the last century in many ways, but that’s partly because it’s so hard to make sense of it. The better we track real experience with it, the better we can make sense of it.

Since studies, and the funding for them, come from those who don’t have the disease, this is the least — and yet most important — thing that patients and clinicians can do to improve the situation for ourselves and those who come after us.

This isn’t a bad snapshot of the natural history of my case, either. Understanding the natural history of a disease is a key element of understanding the disease.

Imagine if all CRPS patients kept meaningful, evolving pain rating scales, and pooled them over the years. What a bitingly clear picture would emerge!

Important legal note: These forms are available free and without practical usage limitations; to use, alter, and distribute; by individuals and institutions; as long as you provide free access to them and don’t try to claim the IP yourself or prevent others from using it. All my material is protected under the Creative Commons license indicated at the foot of the page, but for these pain scales, I’m saying that you don’t have to credit me — if you need them, just use them.

“Beginning in 2000, Reuben, in his now-discredited research, attempted to convince orthopedic surgeons to shift from the first generation of nonsteroidal anti-inflammatory drugs (NSAIDs) to the newer, proprietary COX2 inhibitors, such as Vioxx, Celebrex, and Pfizer’s Bextra (valdecoxib). He claimed that using such drugs in combination with the Pfizer anticonvulsant Neurontin (gabapentin), and later Lyrica (pregabalin), prior to and during surgery could be effective in decreasing postoperative pain and reduce the use of addictive painkillers, such as morphine, during recovery. A 2007 editorial in Anesthesia & Analgesia stated that Reuben had been at the “forefront of redesigning pain management protocols” through his “carefully planned” and “meticulously documented” studies.”

More from the New York Times:“Doctor’s Pain Studies Were Fabricated, Hospital Says” http://www.nytimes.com/2009/03/11/health/research/11pain.html

It’s hard to convey the total horror of the event described here. This physician scientist, who ran the pain clinic at one of my old hospitals, published research that became the cornerstone of pain treatment in the US and abroad. After 13 years of successful, peer-review-published, desperately important work, he recently admitted the following:

• Not one single patient was ever enrolled in key studies.• There was absolutely no basis for the numbers he cited; he invented them.• He was paid a great deal of money to come up with certain results, and that is exactly what he did.

The most influential part of his career was a fraud.

The countless studies founded on his widely-publicized fictions are therefore meaningless, under the rules of scientific evidence itself.

The degree to which we depend on medical science to save us when we really need it — our helplessness at our times of greatest need — require us to have some faith in the processes that deliver our care. This isn’t just another massive fraud, it’s a devastating blow to the cornerstone of healing in the modern age. How can educated patients ever continue to believe that our doctors have anything of value to offer us? How can honest physicians bear to let this situation exist?

He could not have chosen a worse field to work in. In medicine, sooner or later, every field has to rely on pain medicine, and he has fouled the well from which the widest number of patients must drink. Scientific American got it wrong: Madoff was a piker, next to this.

The science of pain control and pain management has depended heavily on garbage cooked by a liar, served by intellectual catamites and eaten by the brainwashed. From there, it was inserted into me and mine, who were assured that this was the best that medical science had to offer.

Too bad there was no actual medical science involved.

…I apologize for the strong language. Can you think of more precise and telling terms to use instead? I’d be happy to change them, if anyone can come up with something better.

There are administrative questions such as, whatever happened to peer-review? Who the hell was looking at his notebooks and other physical evidence of scientific work? Why did it take 13 years for a “routine check” at Baystate to break his cover? What on earth were the most important science editors in the world thinking? How many of them are still employed — and why?

Those aren’t trivial, but they are not what looms largest in my mind. I think of Debbie, and me these past few years, and other friends I can’t name whose lives have been hopelessly distorted and sometimes horribly lost … because modern pain research has been built on one psychopath’s lies, which were funded and supported by a vast network of fellow liars, colluders, and the willfully blind.

This replaces “The Dominance of Duh,” a diatribe written in a haze of detox from overmedication. This post should be more useful.

“First, do no further harm.”

It’s the most important treatment guideline there is.

Why is that so relevant? Because Nature doesn’t give the body a free pass, just because the poison comes with a prescription. Physics and chemistry are not impressed by education; they do exactly what they are supposed to do, regardless of who’s watching them… Or failing to.

Therefore, prescriptions don’t alter the nature of what’s being prescribed. Every assault on the body — however therapeutic it’s intended to be — triggers a response involving the nerves, inflammation, and immune system. Medications affect the liver and kidneys, and probably the intestinal system as well.

That’s a lot to affect.

How do you deal with this in the real world, as a real person with real conditions requiring real medication?

Well, good friends help. So does communication. Here’s why:

Your doctor/practitioner is supposed to do a risk-benefit analysis of each drug prescribed. Some take this more seriously than others, some weigh the risks differently, and each practitioner has a unique idea of what’s really important in the first place. It’s good to be aware of your practitioner’s priorities and beliefs, so that their decisions make more sense to you, and you can be better aware of what to ask about or follow up on.

Communication: Get the lowdown on the treatment from your doctor, your pharmacist, your nurse friends. It can be confusing at first since everyone has their own ideas, but the common themes (and common concerns) will emerge, giving you something to look into more closely. Also, they can tell you what terms to use when you go to look it up online.

Good friends: One reason we have friends is so we don’t have to hold everything in our own heads: we can talk things over with them, and then go back for reminders. Another is because they can help us clarify our thinking, and if your meds can make you a bit confused, that’s essential! It’s important to have friends who can tell you when you’re a mess, and maybe it’s time to get your meds re-evaluated.

Need to get your meds re-evaluated? That brings us back to communication, and talking things over with your doctor. It’s a perfectly reasonable thing to ask, so feel free to: medically speaking, it’s good practice to do this periodically. Bring a friend to the appointment, if that would help you discuss it.

Three more things you can do, essential to health: drink plenty of water, eat plenty of produce, and get a bit of fresh air every day. These help your body clear out the excess, keep your natural detox systems working, and provide your body with the building blocks for recovering from the chemicals — either the added chemicals of medication, or the stress chemicals your body releases around treatments and procedures, or both.

Being a patient is a tough job. We have to trust our beings to people who aren’t us, and that entails a certain amount of risk. It’s EXTREMELY easy to blame doctors for screwing up, but when all is said and done, we own our share of responsibility in that relationship.

So talk to your doctor. Talk to your friends. Drink up and eat your greens. Now let’s take a nice walk …